Most parents have a mental image of their child even before the child is born. Sometimes, when a child is different, there can be a discrepancy between the idealised and the real child. This can take a process of adaptation and acceptance for parents; coming to terms with a new and unexpected life situation.
The range of emotions parents feel in relation to having a disabled child can be confusing, paradoxical and change in response to their environment, often all in the same day. As one parent said ‘it’s a rollercoaster’.
As a parent of a disabled child as well as a Counselling Psychologist I am interested in the emotional response of parent carers and I established Affinity Hub to signpost to organisations and practitioners who provide emotional support for this group.
I also ran a survey online to outline the common emotions parents experience and have included these, as well as quotes from parents, on the website to show parents that they are not alone.
An overview of the common respones are outlined below:
Most parents reported some negative emotions including: Anxiety, stress or worry; feeling depressed or down; helplessness & frustration; anger; guilt; grief and loss; chronic sorrow and trauma. There was also jealousy of ‘typical families’, confusion, fear of the future and concerns about the impact on the wider family. The reasons for this were multifaceted and included: isolation, inaccessibility of services and activities as well as lack of support and understanding from society. The practical and the emotional factors overlapped and were bi-directional.
Many parents also reported a positive impact, stating that they had: grown as a person; put life into perspective and appreciated what was really important; greater expertise, mastery, knowledge & awareness; made new friends who truly understood them; more determination, fight & strength as well as enjoyment and pride in their child. Some reported that it had made them ‘a better person’ with greater understanding and empathy. Around half the respondents referred to hope and having a sense of purpose.
So how can counsellors support parent carers that may come to them for help?
The most important thing is to give them is time and space to make sense of their emotions. To be able to have a place to process what has happened, and the shock and trauma this can sometimes cause, is key as often the constant demands of caregiving, attending appointments, therapeutic programmes (such as physiotherapy, speech and language therapy) and fighting for limited resources or appropriate educational placements can be all consuming. There is very little space left for the parent.
It is important that the parent isn’t confronted with yet another expert telling them what to do. We already have too many experts in our life and the experience can be de-skilling.
In the survey, a significant number of parents reported online support as helpful. This included researching and reading to gain information as well as forums to connect with other parents in a similar situation. Finding new friends within the disability community was important for many.
Good quality help from family, friends and partners were key to support but in direct contrast a lack of help from this close group was felt to be detrimental to wellbeing. Likewise different professionals, for instance teaching staff, therapists, doctors and Local Authorities could be reported as either beneficial or a cause of distress. Voluntary services, such as local or national charities, were rated as generally helpful. Practical factors like respite, money or time for yourself were supportive. For some, faith and spirituality were an important foundation for them.
Your own knowledge
It can also help if you become more knowledgable about disability and this may include the diagnosis (if there is one) of your client’s child. To have some basic awareness of the difficulties affecting someone with say, autism, or spina bifida can be helpful for understanding the breadth and depth of the impact on your client.
But remember that a diagnosis is not a prognosis and there can be a very broad spectrum particularly with conditions such as autism or cerebral palsy. In the media there are often feel-good stories about people ‘overcoming’ certain difficulties or seeing it as a ‘gift’, such as the recent coverage of Greta Thunberg and the climate change campaign and the portrayal of the ‘superheroes’ of the ParaOlympics.
While it is important to have positive, high-profile, disabled role models this is not always the reality for a significant number of people who have the same diagnosis. It can set unobtainable goals. There is often confusion, pain, struggles and stigma. The world does not always make sense for someone on the autism spectrum, it can feel overwhelming and painful if they are hypersensitive to, say, sound or touch. Even the simple act of getting on a bus or finding accessible toilets can be a struggle for those who use a wheelchair. Don’t make assumptions based on the diagnosis or your prior knowledge. See what the client is telling you about their experience with their child and their particular challenges.
There can be a journey for parent carers from the initial shock and adaptation to a place of acceptance, growth and greater awareness of what is precious in life. This is not a smooth journey and doesn’t happen for everyone, certainly not in a simple, linear way anyway.
Parent carer's need sensitivity and to know that there is someone there who is willing to listen to them. With support and over time these parents can become greater humanitarians and advocataes for the most vulnerable in our society. Their wealth of knowledge, skills and resilience can be a powerful force for good. Let’s nurture them and help them realise that their own emotional wellbeing is important and valid for its own sake.
Jo Griffin in a Counselling Psychologist, Parent Carer and Founder of www.affinityhub.uk which signposts to emotional support for parents of disabled children. She is also undertaking a Doctorate at Metanoia Institute researching emotional wellbeing in parent carers. You can follow on Facebook and Twitter
If you are a practitioner working with this client group and would like to be added onto the affinityhub.uk website please email me on here